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What the ALS Ice Bucket Challenge really says about you

As I write this, I’m assuming that you know exactly what the ice bucket challenge for ALS is. If you don’t, then–well, you may or may not be living under a rock. *Not to judge, or anything*. But if you’re of the majority and have either had your newsfeed choked with videos of drenched facebook friends or you’ve taken part in it yourself, you’ve also probably heard the debates.

The challenge, some argue, wastes valuable water that people in Africa are literally dying to drink. Hmm. It doesn’t make sense to me because the same people who are saying that are also going to waterparks where tons of water on a daily basis is splashing on to concrete and serving little purpose. These same people also run through the sprinklers in the summer time, keep the water running as they brush, and take too-long of showers. So that argument just doesn’t do it for me.

Then there’s the side that aruges the challenge is dangerous. Some people have gotten hurt while taking the challenge and some buckets have fallen on some heads. Well–I’m not going to touch that one.

The argument though that has gained the most momentum has even gained the attention of the media. The ALS challenge is a fraud, some are saying. The money is landing in the wrong hands. And that was almost enough to sway me.

But then I met Donna.

And she had the best argument yet–if you could call it that.

Donna was a client of mine at work yesterday, and I don’t think I’ve ever met someone with a heavier heart. Her husband is dying, I learned. And he only has a couple more weeks left, at best.

ALS is killing him. “Have you heard of it?” she instantly asked.

And just like a social media dweeb I mentioned the ice bucket challenge and I immediately regretted it. Why would she care about the nation pouring water over their heads when her husband can barely breathe while stuck in bed? So I quickly apologized. But she stopped me.

She told me the ice bucket challenge is one of the greatest miracles that could happen. The disease is a lonely one, but because of the challenge–even her husband feels a little bit less alone.

The reason ice water is used, she taught me, is because ALS causes muscles and tendons to tense, spasm, and eventually paralyze, ultimately freezing the whole body and all of its functions. Her husband was diagnosed ten years ago, almost to the day, and he told her that ice water is a good way to get a good feel for what it feels like every second of every day. The empathy, in an indirect way, has been healing for him.

This challenge taken on by people all over won’t heal him–of course not. But spreading the word will lead to understanding, understanding will lead to enthusiasm to end it, and eventually, Donna hopes, there will be a cure.

“What better bandwagon to jump on then the bandwagon that lets people know they’re not alone?” Donna said to me. “Despite the money raised, people are learning what this disease is. People are telling my husband, without even realizing it, we see you.”

ALS isn’t the disease that kills the most people each year–but it does kill. 5,600 people are diagnosed every year and the majority of those only lives two to five years after catching it. It deserves the same attention anything else does. Just as cancer stole my dad last year, I know the feeling of wanting people to just know and to just care that it takes the people we love for good.

I know what it’s like–and you probably do too–to fight a lonely battle and to just wish everyone knew what it’s like. When you dump that water on your head it’s saying a lot about you. To people like Donna and her husband it’s saying, “I know you’re suffering. And I want it to stop.”

I’m not one to use this blog as a bandwagon blog. In fact, if you follow me even semi-closely you’ll notice that a common theme is to stand apart and be individualistic. But I’ve learned that we live in a world of mirrors. Everywhere we look we see ourselves. We see our struggles, our turmoils, our bills, our chaos. And rarely do we have the chance to see someone fighting a battle that has nothing to do with us. Rarely do we get to unite as a WORLD and say “I see you”.

Don’t jump on every bandwagon.

But do me a favor. Jump on this one.

“I might have been given a bad break, but I’ve got an awful lot to live for.”

Thank you for this article. I have seen the tons of footage of friends and unknown people being doused with ice water, and just the thought of it makes my whole body tighten up and recoil. I am convinced that a heart attack will follow from the shock. I couldn’t understand why anyone would do this challenge. But in reading Donna’s explanation a light bulb came on! An understanding of the need to be understood. I don’t need to do this challenge… but I can now appreciate others who take the challenge. Thank you for this enlightenment.

Reblogged this on 8ways2 and commented:
I couldn’t have said it any better. People have all kinds of opinions of what’s going on around social media with the ice bucket challenge. This is an eye opening take on it.